Monday, February 9, 2009

ME/CFS in the news

It's been a while since my last ME/CFS advocacy post, and it looks like we're due. According to recent research funded by the Centers for Disease Control and Prevention, psychological trauma in childhood greatly increases ones risk of developing ME/CFS. This is a fascinating finding ... or it would be if the methodology weren't completely bogus.

Says Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic:
[T]he CDC -and the Emory study it funded-- had broadened the definition of the disease to include not just those with the actual immune syndrome, but also people who were, well ...simply fatigued.
You can read her whole post on the Psychology Today blog. It's almost a month old (sorry, I've been busy and not on top of this stuff lately), but still very relevant. Essentially, there has been a LOT of good research indicating that ME/CFS is biological in origin, but it has been drowned out by the CDC, which wants to classify the disease as a personality disorder. The CDC succeeds in this endeavor because it spends a ton of money on PR to promote its view.

Great. So not only are they spending our tax dollars on bad research, but they're also spending more of our tax dollars on bad media spin.


M. said...

It should be kept in mind, however, that it is well possible there is a link between trauma and CFS/ME - and it does not in any way indicate that the illness is psychiatric or psychosomatic in origin (or that it could be treated with psychotherapy), even though that's what the media often makes out of it. It's well-known that in lab animals trauma early in their life causes irrepairable damage to the HPA axis.

It does seem to me that many people with CFS/ME have had a traumatic childhood. Of course, many haven't had, but it could well be a risk factor. I'm fairly sure my own illness was triggered by the extreme abuse I endured, which messed up my adrenals and immune system, though there was obviously a virus involved too and I believe some genes too.

IMO there is no evidence that the CDC wants to classify CFS/ME as a "personality disorder" (which, by the way, would be impossible considering the way they define CFS/ME and personality disorders), but of course they are not particularly interested that the illness and the patients are correctly resepresented. They do consider CFS/ME an infectious disease, but this is far from obvious from the material they usually publish.

cinderkeys said...

Thanks for your thoughtful comment. I agree with part of what you're saying: if childhood trauma X puts people at greater risk for disease Y, it doesn't mean Y is psychiatric. If the methodology had been good in this study, its findings would have been important. The problem is, the methodology was so bad that there's no way of telling if its conclusions are correct.

This really deserves elaboration in a separate post. I have to run off to work now, but I'll address your points in more detail when I have more than five minutes to do so. Thanks again!